Monday, August 16, 2010

Raising the lupus bar of pain and suffering

In light of the fact that I've been venting my frustrations about the need to take a break from all of my baby/big girl room preparations, I've found the silver lining in the midst of my venting. The good news in all of this? The fact that I consider a single swollen finger, elbow, or ankle bone something to blog about...and my ability to tolerate even a little bit of swelling and joint pain, is, well, unacceptable. Even if only a single joint in my body is aching, it jumps out at me like a sore thumb. And, yes, sometimes it IS, in fact, a sore thumb!

Not so long ago, before I realized what living well with a chronic illness really meant, a couple of swollen joints would have meant nothing to me. It would have been par for the course, just part of the normal routine. In fact, I was so accustomed to swelling and pain that I would have probably considered a handful of swollen joints a sign that perhaps I was in remission. Being completely pain-free was so far from reality that having even the majority of my joints operable would have been a real victory.

It's good to know how life has changed. But that's no reason to settle now. I have no intention of allowing my standards to creep anywhere close to what they used to be. And that 5 mg of prednisone I take every other day (i.e. 4 days a week)? I'm averaging a little closer to 5-6 days a week, per doctor's orders, rather than every other day. So I can't get too cocky about things. Come the arrival of that little baby of mine, I'm sure I'll need to increase it even more, given the drop in hormones, added fatigue, and stress of the main event.

So my goal? To get these last few joints to start cooperating, the good old fashioned way: by continuing to take extra-special care of myself with added rest at night, long naps during the day, low stress level, even lower activity levels (i.e. nixing extraneous travel and social engagements), and the willingness to ask for help when I need it. Wow - I've got some living well to do, don't you think?

2 comments:

Anonymous
said...

Thanks for your blogging. It's good to see someone else on the same swings and roundabouts, funny too how to keep a control on the illness without getting complacent, so it never succeeds in controlling you. Be well , and keep up the blogging.

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Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.